On October 21, 2018, over 200 people attended “Steps for a Cure” at Coral Reef Park in Palmetto Bay, Florida, for our mitzvah project. A “mitzvah” is a good deed. As cousins close in age, we decided to do our mitzvah projects together. We are only six months apart and our bar/bat mitzvahs are only three months apart (Ryan’s was in September and Cameron’s will be in December). Doing a joint project made perfect sense for us, mostly because of our family connection to the cause we chose. We are both dedicated to raising money and awareness for Glycogen Storage Disease Type 1a, a rare disease that Cameron’s brother and Ryan’s cousin, Jamie, was born with.
GSD Type 1a is a rare metabolic disease that is centered in the liver. Kids born with GSD are missing the enzyme necessary to process glucose. Glucose is so important to our bodies, because it is the fuel that runs all the cells in the body. Without this essential enzyme, the glucose gets trapped in the liver and the body cannot function properly. It is like a car that runs out of gas and does not have a reserve tank. Jamie, along with other kids and adults with GSD, have to drink cornstarch every three-to-four hours, day and night, in order to keep their blood sugar levels safe. If Jamie misses a cornstarch feed he can have a seizure and end up in a coma. Ultimately, death can occur. Even though this disease is manageable, one mistake can be fatal and kids are still dying from GSD.
Our whole family works around the clock to make sure that Jamie is safe and that no cornstarch feed is ever missed. We have multiple alarms set at all times to make sure that no one oversleeps in the middle of the night. Jamie is an awesome, energetic and silly six-year-old, and you would never know the challenges he faces every day; but GSD is a serious and deadly disease and it affects our lives on a daily basis.
We want more than anything to cure GSD for Jamie and every other child and family dealing with such challenges. The good news is that dogs and mice with GSD have already been cured and Jamie’s doctor, the world famous David Weinstein, is currently working on curing GSD in humans. We are beyond hopeful that we will see a cure in Jamie’s lifetime — hopefully by the time he has HIS bar mitzvah!
We raised $13,000 at “Steps for a Cure”, which was a fun run/walk through the beautiful park. Registration was $20 per person and came with an event t-shirt. We had a 5K run, then a walk where participants could read signs we placed along the path with information about GSD. We had live music, pizza and baked goods for sale, and snow cones for sale by Kona Ice. It was so exciting to see so many of our friends, family and classmates wearing their event t-shirts and participating in a fundraiser for a cause near and dear to our hearts. All proceeds benefited The Children’s Fund for Glycogen Storage Disease Research, the only foundation that raises money for much-needed research. We had such a great time working on this project and feel so proud that it was a great success. We are grateful for our community and friends for being so supportive and would love to turn this into an annual event, until GSD is cured.
Cameron Gussin is a seventh grader at Palmetto Middle School. Ryan James is an eighth grader at Riviera Preparatory School.